REGISTRIES

Registries have been used by public health departments for many years to record cases of diseases of public health importance. In many countries, tuberculosis was the first condition for which registries were established, as many people who suffered from this contagious disease were living in their community. These people often had to remain in their jobs because there were no invalid pensions to support them. If they were excreting sputum containing tubercle bacilli with every cough, it was important for the chest physicians who cared for them, and for public health specialists, to remain in touch with them to ensure that as much as possible was being done for them—and to limit the spread of the disease. When the public health problem of tuberculosis declined in the late 1950s, other troubling diseases were surfacing.

The most important of these diseases was cancer. Many jurisdictions (counties, states, and even nations) established cancer registries, some of which were population-based (covering the entire population of a defined political jurisdiction). This is an important feature of a cancer registry, because it permits the calculation of rates. If cancer registration is prompt and complete, cancer registries are a valuable epidemiological resource that can be used to calculate incidence rates and risks, as well as to maintain surveillance and monitor trends in cancer incidence and mortality.

Cancer registries endeavor to use every available source of information to establish and confirm cancer diagnoses. These sources include clinical reports, reports of surgical operations, reports of biopsies and pathological specimens, radiological investigations, and autopsies. In many jurisdictions, reporting of all these ways in which cancer may present is routine and mandatory. Moreover, it is discrete, so cancer patients may not even know that the information about them and their diagnosis is recorded in a cancer registry. Informed consent is not usually part of the process. The information in a cancer registry is, however, carefully safeguarded.

When individuals with cancer become aware that personal details about them are recorded in a cancer registry, they object very rarely, and they can usually be reassured that the registry serves a valuable public health purpose. The issue of informed consent has been widely discussed by elected politicians as well as by cancer registry staff. In almost all jurisdictions, other than some European nations with a totalitarian past, it is accepted that the need for complete registration overrides the niceties and logistical problems of informed consent. In addition, a certain number of people will withhold their informed consent, which can invalidate the entire registry, especially with rare cancers.

Registries have also been used to record patients taking certain kinds of medication, and for various other purposes. Attempts to establish registries for persons with substance abuse and for sex offenders have not been successful because such persons are often elusive and evade contacts with authorities and relevant specialists.

John M. Last

(see also: Agency for Toxic Substances and Disease Registry; Informed Consent )

Bibliography

Menck, H., and Smart, C. (1994). Central Cancer Registries: Design, Management and Use. Langhorne, PA: Harwood Academic Publishers.

World Health Organizations (1976). WHO Handbook for Standardized Cancer Registries. Geneva: Author.